Two years and one month since Gamma Knife. Hard to believe that this thread has been read almost 11,000 times.
Anyway, I've often alluded to my pre-Gamma Knife history in other posts but now that I look back over this chronicle I've decided to add it here so it's all in one place.
Sit back, relax, it's a long story.
Somewhere around 2004 or so I started to experience tinnitus in my left ear in the form of a hissing sound like air escaping from a tire. It’s not loud and I am pretty much able to ignore it. I still have it, unchanged after all this time.
Several years later, maybe during 2011, I started experience some loss of hearing. Generally found that I was not responding to friends with soft voices but had no difficulty with normal voice ranges, TV or music. I attributed it to age as both my parents experienced some hearing loss as they got older. Like most people I thought about getting my hearing tested but kept putting it off.
It was the middle of December 2011 (ah, distinctly, I remember) that I discovered a substantial loss of hearing in my right ear. Here’s what I mean by discovered. For many years I had been using a head set for telephone conversations at work and at home. The receiver was always over my left year so it never occurred to me to see how my right ear was doing. One day I was talking to my friend on the phone and we were getting some static on the line with my cordless phone. I picked up a second phone and held it to my right ear to check for static but all I could hear was the faint, tinny, far away sound of my friend’s voice. It was quite a shock.
Several other conditions became noticeable during that period. I started getting tinnitus in the right ear. It sounded like wind chimes. It took me a few days to realize that the wind chimes sounded like they were playing Silent Night. I found that amusing since it was just before Christmas.
I also started experiencing dry eyes at night. That’s been continuous and I use Refresh. I don’t know if dry eyes are related although I have read that Acoustic Neuroma patients are known to have dry eyes post-surgery.
As a precaution I went to my regular physician on December 23, 2011. The visit was disappointing to say the least. He found nothing in the ear to explain anything. He had his assistant do a tympanogram but I think she got the leads reversed. She tried to do an audiogram but couldn’t get the machine to work. It was a bit of a fiasco but the doctor put me on medication on the odd chance that it might have been an infection. The medications were:
Methylprednisolone 4mg dospak 21’s
Amox-Clav 875mg tablets
I then reported my condition to my primary physician at the Phoenix Veterans Administration Medical Center at which time I was referred to an audiologist. The earliest appointment available was February 14, 2012.
By then I was experiencing balance issues.
The result of the visit to the audiologist was a finding of profound hearing loss in the right ear with zero word recognition. I was approved for hearing aids and the audiologist ordered the Phonak Cros and Audeo which I have and still use to this day.
She gave me a referral to the ENT. The earliest appointment was for March 5, 2012. At that time the ENT reviewed my history and ordered an MRI with contrast. The MRI was scheduled for April 4, 2012.
The results were given to me by the ENT on April 12, 2012. The MRI report is as follows:
Cylindrical intracanalicular enhancement. noted within the right
internal auditory canal measuring approximately 3 x 9 x 4 mm
(Ap x transverse x craniocaudal) likely compatible with an
The ENT used the terms "acoustic neuroma" and "vestibular schwannoma", both of which I wrote down along with his brief explanation of the nature of the "benign" tumor. During that visit I reported balance issues, that I was unsteady on my feet and bumping into walls.
I agreed to monitor the AN (also known as Watch and Wait) and have a follow-up MRI in 6 months.
After that news I went home and started researching Acoustic Neuromas and learning all I could. I joined the Acoustic Neuroma Association and have been participating in forums where I have learned much about the experiences and options of others.
During the next 6 months my balance issues remained rather constant but more noticeable when I was walking on uneven ground or working in the yard or on projects in the workshop.
I returned for my second MRI on October 10, 2012. After finishing the MRI I obtained a CD of the images of both MRIs.
As soon as I got home I put the CD on the computer and, using the first Radiology Report, was able to locate the image from the first MRI that showed the Acoustic Neuroma and the corresponding image from the second MRI that showed the growth of the neuroma over the six month period. The MRI images had centimeter scales along the side and bottom of the image so I was able to determine that the AN had grown about 20%.
It was then that I decided it was time to kill it.
I obtained the written report of the second MRI from the ENT on October 18, 2012:
There is an enhancing extra-axial mass within the right IAc
extending from the porus acusticus to the fundus thrat measures
1.1 cm x 0,4 cm x 0.4 cm slightly increased in size compared to prior exam.
There is equivocal slight extension to the cochlea. There is no significant
extension to the right cerebellopontine angle.
During that visit with the ENT I was advised that future treatment would be handled by non-VA facilities but paid for by the VA.
At some point concurrent with the results of the second MRI it dawned on me that I hadn’t been hearing the chimes and tones in my right ear that I had reported earlier in the year. I hooked up headphones to my computer, played some music and, instead of the faint, tinny sounds of before, heard absolutely nothing.
While all that was going on I learned from this forum that the House Ear Clinic in California would provide a free consultation upon review of AN history and MRI images.
On October 30, 2012 I sent my CDs and history to House. On November 8, 2012 I had my phone consultation with Dr Wilkinson at House. Options discussed were Gamma Knife and translab surgery. He spoke highly of translab surgery as a relatively quick remedy to the balance issues and explained that Gamma Knife would not relieve balance issue and could make it worse. Frankly, I took his consultation with a grain of salt because I had already learned from this forum and other research that neither points were entirely true and that House invariably recommends surgery because there is no radiation treatment available there.
It was about that time that I had pretty much decided on Gamma Knife subject, of course, to further consultations with experts.
I am fortunate to live in Phoenix, Arizona which is home to the Barrow Neurological Institute. BNI has an Acoustic Neuroma Center staffed by a team of Acoustic Neuroma specialists who offer both surgery and radiation and are impartial in their consultations.
The VA approved funding for the outside services and I had a consultation with Dr Porter (neurosurgeon) at BNI on November 9, 2012. He was in agreement on Gamma Knife based on the small AN, my age, and symptoms. In November I had additional consultations with Dr Brachman (radiologist) and Dr Weisskoph (neurotologist).
I was subsequently scheduled for Gamma Knife in late December 2012 but the three doctors had a scheduling conflict and the treatment was pushed forward to January 22, 2013. That, dear readers, brings us to the beginning of this thread where I describe my day of Gamma Knife and post Gamma Knife experience.